Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi to all off my IT friends, have been doing IT herceptin at 100mg weekly for almost 6 weeks. Still on Tykerb 750 daily as tolerated. IV 105mg Herceptin weekly. Tried a short run of Navelbine, with a negative bone marrow I still have a left shift, (some type of funky immature cells) in the cbc every week. Changes in CBC started with navelbine so that was a short run of that for me. Will redo scans here the next few weeks looking to go to every two weeks by summer if all scans are good. I am able to obtain my Herceptin thru the the mail in pharmacy thru my husbands insurance plan.
Peace and prayers and healing to all

Darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI of this week:
Carol is still NED even now that she is no longer doing IT herceptin for last 8 months.
Seems that damage done with the stroke has opened the BBB for IV herceptin to pass through. She is only taking 6mg per kilo IV herceptin and nothing else. No signs of fits for the past 7 months.
Stroke is clearing but still some old hemorrhage can be seen in it.
She still has quite a good quality of life, but still exercising to start walking again.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
Good to hear Carol is doing well. Nina is afraid to stop the IT or IV Herceptin. She is at IV Herceptin every three weeks and IT Herceptin every four weeks. The IV is administered locally and the IT is administered at MD Anderson in Houston.
I think you have a good point about the BBB. It is likely that the IT Herceptin did the job in the time it was administered. The stroke occurring may have been due to the removal of the cancer cells and the collapse of the support system in the brain. That was something I would not have considered a potential issue, but I will forward to others about deep brain lesion potential side effects. The problem is that if the you do not stop the cancer lesions from growing they will kill the person as well. That is something that will have to be thought about by the Brain Cancer specialists.
Good luck. I would love to get out to see you, but it probably will not be this year. I will be going to Hawaii in July for Nina and my birthdays, and then business travel in the Us otherwise.
Glad to hear that Carol is recovering from the stroke. Our thoughts are with you and we hope that your lives are able to return to close to normal.
Paul and Nina

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

So glad to hear that Carol is still doing well and gaining strength.
Susan is still getting IT Herceptin 80 weekly. She is now on Abraxine also weekly IV for the enlarged clavicle lymph nodes. The Abraxine is shrinking them and she is doing well on this routine. They did have to cancel one treatment of the Abraxine because of low platelets, but other than losing her hair, she is handling it well and feeling fine.
She has not had an MRI for a while but she is sure feeling much better.
My best to all,

Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi Mario I am glad Carol is doing better. Evilin I am glad daughter feeling better as well. Thanks Paulfor leading the way.
I am having surgery to debulk and remove the t 8 lesion and fluid on the 29th. Neuro symptoms are rapidly getting worse. with no quick IT drug available this is what My family and medical team have decided to do. Cool thing is it will be done in Phoenix at Barrows Neurological institute, world class neuro drs and some really good technology and inpatient neuro rehab. since I am already his patient was able to get in very quick. The fluid has pushed the lesion more toward the right side laminectomy style. Best case coming out weak, which I already am, but should stop the growth and stop further nerve damage. Then go back to IT/IV herceptin

Peace and Prayers to all
I will update when they let me have my electronics back!!!!!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

I will be thinking of you on the 29th and am hoping you have great success with the surgery. Will be looking forward to your update.
My very best wishes !

Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

IT Perjeta is still not in clinical trials. Nina is doing well, but has a spot near where they did the excision and Gamma knife in November 2009. In March 2014, it was a dire issue. In April it was maybe an issue. Last week it was probably not an issue. Stressed out for 60 days needlessly. Back to MRI scans once every two months on the brain and spine. So far so good. I looked at the MRI scans from the past four and a half years (wow...that seems short some days and such a long period other days). I saw slight differences over the past year (one little part looks more nodular), but it might be death of cells (like radiation oncology thinks) versus cells regrowing.

Cigna was being a pain but it was because of a new person approving the reviews. Now that is settled. Still, $4500 deductible before out of pocket max met (did that by February 15). Put $2500 into FSA, but other $2,000 comes out of my wallet immediately.

The Perjeta in the brain using Intrathecal means is still not approved. Genentech will not say why. I hope there were some changes that were to be done in terms of dosing to get to 100 mg per dose. We shall see.

It is strange to be working at the plant that is saving so many lives. I spread the word from this blog on the people that are being treated: The mothers that see their children get married, get to see an extra year of sports, that get to hold their grandchildren, that get to take another trip with their significant others, and that just get to see additional summers. I also talk about the side effects of drugs, the desperation of not having good answers, and reading about the more negative outcomes.

This disease is one I would not wish on any person. We are at the forefront of treating it. There are so many new methods coming down the line that the disease is likely to be put into remission on a regular basis in ten years. Much like patients that were fighting infections in the early 1940s as antibiotic manufacturing start, the women that are undergoing treatment in many cases just need a few more years to get great treatment options. I hope that I can shorten the time for new drugs to market, can inform those with issues of options to get additional quality time, and to be part of the strong emotions that this group gives out.

Keep supporting one another, and I will do the same. Traveling 80% of the time since Jan 13, four weeks home M-F but home every Friday night while leaving every Monday morning, is hard. The benefit is that I should be able to review and respond to emails better.

Fight back. Do not give up hope. Ask questions. Get Answers. The impossible happens because medical care people stay inside the box, some doctors think outside the box, but stand on top of the box and use it to get better and be heard.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

ASCO abstract re: T-DM1
"Author(s): Rupert Bartsch, Anna Sophie Berghoff, Margareta Rudas, Elisabeth Bergen, Michael Gnant, Karin Dieckmann, Katja Pinker, Christoph Zielinski, Guenther G. Steger, Matthias Preusser; Department of Medicine I, Clinical Division of Oncology and Comprehensive Cancer Center, Medical University of Vienna, Vienna, Austria; Institute of Neurology, Medical University of Vienna, Vienna, Austria; Institute of Pathology, Medical University of Vienna, Vienna, Austria; Medical University of Vienna, Vienna, Austria; Comprehensive Cancer Center, Department of Surgery, Medical University of Vienna, Vienna, Austria; Department for Radiation Therapy and Radiation Biology, Medical University of Vienna, Vienna, Austria; Department of Radiology, Medical University of Vienna, Vienna, Austria; Medical University of Vienna, and Initiative “Leben mit Krebs, Vienna, Austria, Vienna, Austria; Department of Medicine I, Clinical Division of Medical Oncology, Medical University of Vienna, Vienna, Austria
Abstract Disclosures


Abstract:

Background: Local treatment options such as radiotherapy or neurosurgery are the mainstay of BM management. Whole brain radiotherapy (WBRT), however, is associated with severe late-toxicity. The LANDSCAPE trial established lapatinib plus capecitabine (LapCap) as primary systemic treatment in oligosymptomatic patients (pts) with multiple Her2-positive BM. Limited evidence exists regarding the activity of antibodies in BM. T-DM1 is an antibody-drug conjugate linking trastuzumab (T) to an anti-microtubule agent. T-DM1 provides activity in pts progressing upon T and has lower toxicity as compared to LapCap. Here, we investigated the activity of T-DM1 in newly diagnosed or progressive BM. Methods: A total of six consecutive pts (median age 55 years) with Her2-positive breast cancer and BM were treated with T-DM1. In two asymptomatic pts, T-DM1 was administered as primary systemic therapy, while four subjects had already received local therapy and had documented CNS progression. T-DM1 was administered intravenously at a dose of 3.6 mg/kg body weight every three weeks; re-assessment of disease status was performed every three cycles. At baseline and restaging, MRI was performed. CNS response was defined as a reduction of lesion size of ≥50%. Results: Median follow-up was 6 months (m) and median brain metastases-free survival 11 m, respectively. All pts had received prior T, three (50%) had already received LapCap, and two (33.3%) pertuzumab. Currently, 4/6 pts (1 with primary treatment and 3 receiving T-DM1 upon CNS progression) are assessable for CNS response. 2/4 pts (50%) had partial remission, while one patient progressing upon prior local therapy had stable disease lasting for 15 cycles. One patient had minor response on MRI but no reduction of pre-existing brain oedema and increasing cortisol doses and was therefore deemed PD. A significant LVEF drop was observed in one heavily pretreated patient. Conclusions: This prospective case series again indicates that systemic therapy offers activity in Her2-positive BM. Currently, LapCap remains the standard of care. Still, T-DM1 offers relevant clinical activity; therefore, the role of T-DM1 in BM should be investigated in larger studies."
http://abstracts.asco.org/144/AbstView_144_134326.html

You're a real trooper Rolepaul.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Pretty interesting as TDM-1 has a molecule that might allow blood brain barrier penetration. It is not good for direct input into the cavity (though an Ommaya reservoir or lumbar puncture) but IV appears to have some benefit. The goal right now is to get IT Herceptin and Perjeta going in clinical trials.

We are on the edge of making this disease go into remission for many women. I just want to say that many of us in the industry want this to occur as soon as possible.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

After 30 months, there is some signs of one very small spot on the brain slightly increasing in size when compared versus one year ago. Looking at Perjeta via Intrathecal to address the spot after this long with Herceptin. As far as is known, this would be the first time ever done. If there are not good results, then the spot will get Gamma Knife treatment in November. Otherwise, Nina walks five miles a day, does Water Aerobics, Yoga, drives to the airport, and is generally good shape. Keeping at the cutting edge in the fight against the monster.
30 months after getting a three to six month probable lifespan and still doing the Energizer Bunny routine.
I hate to lose. Never give up.
Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

That one little spot hopefully it's just scar tissue. Thanks for the update Paul! Nina's story gives me so much inspiration! From 3 months to 30 months that's a miracle with much love and blessings!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

So the good news is that Nina's brain lesion is now called stable. They see incredibly small changes in the MRI scans of her one brain lesion. The docs do not know what it means. The thought is stay the course with IT Herceptin every 4 weeks and another set of MRI scans in 8 weeks. No IT Perjeta because they want to have the IT Herceptin study at Northwestern fully enrolled first. Kind of angry, but I understand.
Spot found on lymph node at top of lung, so told Perjeta/TDM-1/Taxotere. Went with TDM-1 only for now. Nina is going to Italy for 17 days this Saturday so did not want any side effects to slow her down. Another CT scan in eight weeks, next time at MD Anderson, to determine the treatment plan for that one.
Made at people dumping ice water and then donating for research on ALS. How about putting money into the cost of treatment, particularly the difference between the $4500 for max out of pocket and the $2500 for FSA to pay for treatments. Many of the people in the US have a $2000 surprise in February, March, or April as they find out that there is a gap.
Both Nina and I are staying strong. Had 55th birthdays, 19th anniversary, and got our 29 year old son married. None of these would have happened without hard work and a lot of faith from this site. Keep on giving one another a shoulder to lean on.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Paul,

Best wishes to you and Nina. Susan is still doing the ommaya Herceptin every week. Just finished cyber knife to an enlarged subclavicle lymph node.

Her genome results indicate afatinib or neratinb is appropriate for her because of the mutations found. They are trying for the afatinib first but on first try the insurance has refused approval.

The chemotherapy is getting tough for her - low blood counts and unsteadiness. She has taken herself off of them - hoping for the more targeted approach.

Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Carol still doing fine. She started to walk again this summer. She has been off IT herceptin for last 16 months now. Last MRI and CT scan done in May showed she is still NED and stroke clearing more and more. Quality of life getting better day by day. Will scan brain again next week. She is only taking 6mg/kilo IV herceptin and nothing else. Been taking this only treatment for past 16 months now. She has lost 35 kilos in 16 months. Now standing at 77 kg.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hello everyone!
I am late to this party,
Just found this thread today, 9-6-14.

I was initially diagnosed April, 2012...had R mastectomy May, 2012....A/C chemo July, 2012, followed by Taxol/Herceptin, then Herceptin only until Sept 2013.

Discovered one 2 cm brain lesion in June 2014, following a seizure. No other symptoms. Did one Gamma knife treatment at Cleveland Clinic....follow up MRI showed 50% reduction of lesion, no necrosis, no new lesions. Finished steroids in late July, currently considered "stable" , no symptoms, and scans show no evidence of disease elsewhere in body.

My question is: should I be doing more treatment? (ie IT Herceptin, etc.)
All of my docs are saying "It's all good, could be isolated incident, scans every two months, treat as needed."

I felt ok with that, but now, after reading thru this thread, I am questioning our decision. My quality of life is pretty much normal...I am working, exercising, participating in life as usual, feeling healthy and fine.

Really disliking HER2+ and all of the "grey areas" !!!

Very appreciative of all of the love and support on this board!!! Thankyou!!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

If you are her2+ and herceptin is working in all your body except your brain, you may decide to get herceptin to your brain by intrathecal ways. But I am no expert in this. Maybe rolepaul can help you better at this.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

We are back and happy. Nina had a subcarinal lymph node that had doubled in size by August. The brain lesion was slowly increasing in size for five years. In August we switched to systemic TDM-1 and continued the IT Herceptin with Topotecan. It appears we have put Nina into full remission. That is beyond anything we could have hoped for. Nina is the only alive of 288 patients with brain/spine HER+ involvement at MD Anderson in the period of 2008 to 2012. As far as we know, she is the only one without whole brain radiation where the disease has been put into remission in the United States. There is hope for success in this area and for a standardized treatment that actually works.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

To you, your wife, and the medical team THANK YOU for how well you've handled this crisis and the progress thus realized. What an inspiration!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

hello read over the thread quite an inspration I am on the IT study in NewYork MY doc said in last visit That I have slight progression better then when we started in 1/14. Thought the thing to do i find a doc that would do the treetment off study at a higher dose. I did vary well at the start at twice then once a week treetments. Any thoughts where I may find some one????? east coast wold be great///////
thnks ahead of time
zue

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

I think the IT Herceptin needs to be at least 1. mg per kg to work. Nina's was piggybacked with Topotecan, which may be important (but probably is not). Try Sloan Kettering in New York or ask at MD Anderson in Orlando (Dr. Nick in the Breast Center). Rumor has it that Genentech is looking at IT Perjeta out of Univ of South Calif, but I would not wait. Send me a personal email if you want.

Back for more MRI scans on Dec 13 through 15. Our son's 30th b-day is the 13th. We will celebrate the following weekend if things are good.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Repeat MRI scans show that full remission has occurred. Two residual spots are Gamma knife scarring from December 2009 to a high degree of confidence. Nina is walking five miles per day, is doing yoga four days per week, and is performing all her previous activities without any side effects. First time ever at MD Anderson. I hope this gives a potential road map for others. All it takes is knowledge, determination, and good doctors. Luck was also important for Nina.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Stellar news. I just love this thread.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Feb 12 results as good as October and December. That means at least four months (and probably longer) with no brain or systemic disease seen. Almost ready for the happy dance, but Nina is pretty scared. She has five tough years of fighting brain mets (although the last 2 1/2 have been very positive). No spinal disease seen since May of 2012, almost four years. How do I get her to think in terms of ten years out and not two months until the next MRI scans? She is healthy and wants to go give massages to keep her spirits up and help bring extra cash into the house. We can definitely use it.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Very happy for you and Nina !! Thanks for sharing this great news !!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI and CT of today - shock!

3 new lesions can be seen for the first time in over 2 years, 7mm, and 2 others of 4mm.

We have been on IV herceptin 6mg/kg for past 21 months. Now back to problems!

I would like to ask anyone of what can be done except IT herceptin, anyone is doing IT pertuzumab yet?
Does TDM1 work for the brain?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Ask to have 0.4 mg of topotecan in 5 mls of sterile water added to the treatment. Do not use TDM-1 as the non-Herceptin part is too damaging. University of Southern California in Los Angeles is getting ready to run Pertuzumab for IT shortly. Contact them today. Eric Chang would be one of the ones to try to meet.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank you Paul, my oncologist in Europe is researching on best way to go, till next week and then we decide from there. Will tell him about the topotecan.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Marvin, I would have them start the Pertuzumab at 40 mg for a few weeks and then go to the same level as you were having done with the IT Herceptin. Also, I wonder if you go back on the IT Herceptin whether that stops progression.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

But has it already been tried intrathecally?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

No, but I know what the protocol will be. That is part of something not public. It goes along with the Herceptin not tried at the higher doses prior to January 2012 for people like Carol and Nina. I would look at the Toptoecan and Herceptin as the clinical trial might yet be open.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Our oncologist seems to favour for IT herceptin at 150mg again as we did before before trying anything else. Now Carol weighs only 65 kg, so it is a very high dose, 2.3 mg/kilo.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Ask him to think about toptotecan as well. He can ask Dr. Loghin at MD Anderson Brain and Spine in Houston Texas.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

First intrathecal herceptin done last friday 6th March after 21 months without any such treatment.

Dose 150mg herceptin and 50mg hydrocortisone.

No pain or funny feelings. All went well, not even painkillers or dexamethasone were needed.

At the moment this will be the only treatment till we scan again in 12 weeks.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
That is great news. Send my wishes to Carol.
We are still trying to get to Malta on a trip. I am halfway through working in Omaha during the week and driving home to Denver on the weekends. I get $500 more than it costs, so I am trying to bankroll a trip out of this to Italy.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hello,

I was just coming to look for this thread, and here it is front and center. I could use some help!

With a previously treated brain metastasis possibly growing ( unknown if its growth or necrosis) on my latest MRI's, plus a new 9 mm spot very close to it, I am trying to figure out how best to proceed with treatment. I have had stereotactic radio surgery- once to this older spot, and once to another spot that has shrunk.

I mentioned IT Herceptin to my Oncologist, who was very open minded about it. It has not been done in my treatment facility, and he has many questions about it. Is there a doctor who would answer his questions such as dosage, and pre-meds, side-effects, etc.? Or should I seek out going somewhere for treatment? I live on the border of North Dakota and Minnesota, and have had great treatment here so far.

For now they have referred me to a Neurosurgeon for a consult, but I am open to suggestions, any help you can offer. Thank you!!

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Vicky leptomeningeal metastases are those that sit on the outer linings of the brain and spinal cord. Cerebrospinal fluid circulates within those membranes.

If your brain mets are not near the outer (or inner) linings of the brain, it is unlikely IT herceptin can get to them as I understand it.

Please be certain to clarify where your brain mets are and how far from the CSF they may lie.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Lani,
Actually, at the doses that were used with Nina and Carol, three of the deep brain patients had good results. It just means that steroids are needed to keep the swelling from causing problems. It is not easy to get patients treated, but there have been three that I am aware of that all had good results. IT does work better on leptimeningeal cases, but there is pretty good evidence that these higher doses are giving positive results as well. As always, Gamma Knife should be the first choice if the lesion is smaller than 2 cm and not near critical function areas. I get information that is not yet public knowledge. That is what I do for a living. There are overseas locations that are not always Medical Industry or medical research friendly until a leader's wife/daughter/mother/granddaughter has an issue.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank you Rolepaul, and Lani for your insight. I appreciate the sharing of info that can me figure out all of my treatment options and to navigate this tricky time as best as I can.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI of yesterday:

All three spots gone and none new seen, thank God.

We have done 10 IT herceptin till now each of 150mg herceptin, and 50mg hydrocortisone, each shot every 10/11 days, i.e. 2 times every three weeks. We also did 6mg/kg IV herceptine every three weeks.

Will continue same treatment for another 3 months, and MRI again.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,

Thanks for sharing your good news! Looks like this treatment is working. I'm very happy for you.

Take Care,
Brenda